TBI S-O-S! Restoring a Sense-Of-Self after Brain Injury and Concussion

Self Matters. Period.

Both privately and publicly, Self does matter. Not only do we orient ourselves in life and manage to get on with our daily lives, based on our Sense-Of-Self, but the rest of the world relates to us as it perceives us. Maintaining a stable public persona, and being able reinforce your Sense-Of-Self around others is the one thing that makes socializing work. Showing up each day as a slightly different person doesn’t just undermine your self-confidence; it challenges the trust of everyone around you, especially those who are accustomed to dealing with you in a certain way. Even if their perceptions of you are flawed and far from the mark, the stability of their perceptions is what supports social interaction. People may actually know that they’re wrong about you, and you’re wrong about them. But as long as everyone is wrong in a consistent manner that makes predictable social interaction possible, the wheels can keep turning freely in the communal machine.

When you’re shaken by TBI, many of the old connections in our brains and our nervous system can get severed, frayed, damaged — some of them severely. (I’m peripherally including the central and autonomic nervous systems — spinal cord, too — because these are the delivery systems that transport the electrical/chemical impulses that guide our experiences and expressions of self.) And that shaken state has repercussions for everyone involved.

In an instant, the systems that that used to make it easy to be who and what you are, can stop working the way they used to. Noises that used to be fine, suddenly bother you. Sunlight that used to be so nice to see, is now a source of pain and suffering. Taste and smell and touch can be affected. Your balance can be thrown off — sometimes so severely, that you’re too busy trying to stay upright to pay attention to things like what people are saying to you. It’s hard to pay attention to the bigger picture, when your most pressing immediate struggle is to not throw up. Memory can either disappear, or be so eroded, that you can’t carry on a full conversation with someone because you keep losing the train of the conversation. And fatigue… Well, when you’ve got so little stamina that you can’t make it through the day without a four-hour nap, there’s not a whole lot of room for much else in your life, other than managing your energy and doing damage control.

Without warning, in a very real sense TBI turns you into someone different. The differences may be drastic and obvious, or maddeningly subtle and invisible to anyone but you. The changes may be immediate, and some of them may be gradual, sneaking up on you over time. But they do happen. Often without your control or say-so.

Suddenly, the old ways of doing and being in the world are no longer available to the extent they once were. Things that used to be easy and effortless become a chore and a struggle. Getting dressed in the morning becomes a trial by fire, with none of the steps seeming obvious. The kitchen where you fix your breakfast becomes an obstacle course, apparently designed to drive you crazy. Sometimes abilities that used to be second nature to us disappear entirely, seemingly never to return. The well-practiced habit of shading the truth to suit your designs, suddenly doesn’t work, and you can’t keep your story straight. You try to draw, but you have a hard time holding your pen, and you get so tired with the effort, you can’t finish anything you start. Your conversations with people you know and like turn into social minefields, with the constant threat of misunderstanding threatening to derail the relationships. The once-cool demeanor you used to have under any and all conditions… well, that’s gone… seemingly forever. Driving during rush hour becomes a gauntlet from hell.

Little by little, these problems erode not only your self-confidence, but also your relationships with the rest of the world. People who are accustomed to dealing with the sort of person you once were, need to either accommodate a new person in your place, or they just quit dealing with you at all. You have a slightly different way of speaking, a different way of looking at people, a different way of carrying yourself. And the people around you who built up an entire interactive repertoire around the person you were, must suddenly deal with someone who is not upholding the unspoken rules of predictable social interaction.

As small behavioral social anomalies balloon into faux pas and outright failures, not only is your self-confidence undermined even more, but your relationships are eroded and function less fluidly. Part of it is you, part of it is the rest of the world. The downward spiral becomes a self-fulfilling prophecy. And if you manage to figure out there’s a problem before it threatens to destroy your life, you’re one of the lucky ones.

With TBI, the once-known is now unknown, the once-familiar becomes strange (or disappears entirely), and challenges crop up where they “shouldn’t” be. And that deviation from the norm, that separation from the old familiar ways which tell us who and what we are, can be utterly devastating. When we lose our old, dependable fluidity and ease with the activities that once made us productive human beings who knew our place in the world, we literally lose our Selves. We no longer know exactly who we are, why we are alive, what our purpose in life is. We no longer know where we fit in the world, in our communities, in our extended families and social contexts. The parts of ourselves that used to be so fluid and easy… that feeling of familiarity and ease, well, it’s pretty much gone.

It needs to be rebuilt.

Now, many of the problem areas may be “fixable” to some extent. The brain is magically plastic, and it creates new connections and new wiring where it needs to. It’s now commonly known (contrary to scientific prejudice of past decades), that the brain will “recruit” different parts of itself to do the job of parts that have been hurt or damaged. Our brains — and our spirits — are incredibly resourceful, that way. And as we now know, there is not only ONE part of the brain that does only ONE thing — areas for speech and language comprehension are a lot more distributed than we used to think. Plus, different people have different areas that handle the same sorts of functioning. Everyone is unique and different that way, and the brain’s substantial ability to recover and restore at least some of its functionality is nothing sort of miraculous.

The thing is, under these circumstances when the brain is trying to build back its lost functionality — irony of ironies — even more energy and focus is required. Going through the motions every day to make up the difference between then and now (and teach your brain to do things a little differently than before) so you can keep yourself on track takes a whole lot of energy and a whole lot of focus — just at the time when you have less energy and less focus than ever. Which, frankly, sucks. It’s one of the worst things about TBI — at the very time you need more resources, more time, more direction, more of just about everything… you actually have less.

On top of this, you may not even realize you need more energy and focus. All you know is, things aren’t going right. Things aren’t working out like they used to. You’re having trouble and you don’t understand why. In the face of unidentified difficulty, you can just keep going the same way as you did before, trying like crazy to get things right — and perhaps getting a little better each day — but running out of steam in the process, losing your focus and what cognitive capacity you have, and ending up on the business end of the cosmic cattle prod over and over and over and over and over and…

When you get stuck in that loop, even more fuel, more determination, more drive is called for. And you may in fact be getting better a little bit at a time — or even a whole lot, seemingly out of the blue. But regardless of your rate of improvement, you need to keep going. You need to keep up the level of effort required to get your brain back on track — and your life, too. TBI is a lifelong condition that demands continual, consistent mindfulness. It sounds a little exhausting, when I think about it, and maybe it is. But the alternative is the equivalent of wading mindlessly into a swamp filled with snakes and alligators listening to dance music in noise-cancelling headphones, obliviously splashing around to the beat, whilst the snakes and ‘gators circle closer.

So, where do you find the inner resources to keep up your mindful vigilance? Where do you get that drive to keep going? From the Self, your individual identity, the core character of your soul, and from the Sense-Of-Self that unconsciously signals when it’s safe to proceed, and when to stop short.

As I mentioned before, I believe that Self is a collection of unique traits and activities that are familiar to us, which we recognize as Who We Are. The most familiar pieces are the parts of us that are easiest to express; they require the least amount of effort to do.

Our Sense-Of-Self is the level of comfort we feel living in our own skin. It provides the intrinsic motivation to follow the well-worn “grooves” of habit in our behavior, and it also takes not of the feedback that comes from that behavior. The easier these parts of us are to express, the better they feel, and the more we want to do them. And the more familiar they become through repetition, the better they make us feel when we do them.

On top of it, the more familiar our own behaviors are to others, the easier we make it for them to interact with us, effectively strengthening their perceptions of our Self, as well as their Sense of that Self. When we present predictably to others, they can develop an interactive repertoire that defines who we are – and who they are when they relate to us. It’s no small matter, our Sense-Of-Self, for it guides not only us, but our larger community as well. When people know us as stable, predictable personalities, they don’t have to keep improvising every time they interact with us. They can relax into a familiar rapport, and the better they feel when they’re with us. Even if they’re uncomfortable when we’re around, if it’s a familiar discomfort, it can be easier for them to negotiate than an unfamiliar comfort.